Organizations Towards 'Big Data'-Driven Approaches in Personalized Medicine? An Empirical-Ethical Study in Health-Related IT

摘要

Personalized medicine (PM) operates with sensitive biological data to optimize prevention and therapy. Therefore, ethical concerns by stakeholders such as patient organizations (POs) need to be reflected. We used an empirical-ethical approach including a website-analysis and 30 telephone-interviews for gaining in-depth insight into POs attitudes towards PM and Big Data. Three different types of stakeholder commitment can be derived from our data: 'Biomaterial donors' support research projects through tissue donation while 'financers' provide financial aid. The 'independent' keep control over their tissue donations and decide what it is used for. Our insights allow to shape future innovations in IT towards stakeholder's needs.